Ingabe ingane yakho inomdlavuza wobuchopho onjengalona? (I-Diffuse Intrinsic Pontine Glioma - DIPG) Singaxoxa ngalokhu?

Kuvamile ukuzizwa ucindezelekile kakhulu lapho ucabanga ngempilo yengane yakho. Ngezinye izikhathi, sikhathazeka kakhulu lapho sizwa ngezifo ezithinta izingane. Namuhla, sizokhuluma ngesimila sobuchopho esibi kakhulu, kodwa kubalulekile ukuqaphela. Sibizwa ngokuthi i-diffuse intrinsic pontine glioma, noma "i-DIPG" ngamafuphi.

Kuyini i-DIPG? Lisho ukuthini leli gama?

Nakuba leli gama lingase libonakale lide kancane, ukwazi incazelo yalo kungakunikeza umbono ngalesi sifo. Ake sibheke incazelo yezingxenye zalo.

• Ukusabalala: Lokhu akufani neqhubu endaweni eyodwa. Amangqamuzana omdlavuza asakazeka futhi axutshwe namangqamuzana anempilo. Kufana nokuthi uma ufaka ithonsi ledayi engilazini yamanzi, lisakazeka kulo lonke ingilazi. Yingakho kunzima kangaka ukususa ngokuhlinzwa. Ngoba akunakwenzeka ukususa la maseli asakazekile ngaphandle kokulimaza izingxenye ezinempilo.
• Okungaphakathi: Lokhu kutholakala ngaphakathi kwesiqu sobuchopho bengane. Okusho ukuthi, kuxhumene nakho futhi kungena ngaphakathi kakhulu.
• I-Pontine: I-Pontine ibhekisela engxenyeni yobuchopho ebizwa ngokuthi ama-pons. La ma-pons ayindawo ebaluleke kakhulu. Alawula izinto ezibaluleke kakhulu emzimbeni wethu ukuze siphile, njengomfutho wegazi, ukushaya kwenhliziyo, nokuphefumula. Akukhona lokho kuphela, kodwa futhi alawula izinto ezifana nokubona, ukuzwa, ukukhuluma, kanye nokulinganisela. Ngakho-ke lesi ngesinye sezizathu ezenza la mathumba '(DIPG)' abe yingozi kangaka.
• I-Glioma: I-glioma iyisimila esikhula lapho amangqamuzana e-glial eba nomdlavuza. Lawa maseli e-glial awuhlobo lweseli oluvikela amangqamuzana ezinzwa, noma ama-neurons, ohlelweni lwethu lwezinzwa oluphakathi (i-CNS).

Kalula nje, i-DIPG iyisimila esibi esivela kumaseli e-glial kuma-pons, okuyingxenye yobuchopho bengane. Ibhekwa njenge-glioma ekhula ngokushesha futhi esezingeni eliphezulu .

Uyini umehluko phakathi kwe-DIPG ne-DMG (i-Diffuse Midline Glioma)?

Kungenzeka ukuthi uke wezwa nge-`(Diffuse Midline Glioma - DMG)`. Esikhathini esidlule, amagama athi `(DIPG)` kanye ne-`(DMG)` ayesetshenziswa ngokushintshana. `(DIPG)` nawo angaphansi kwesigaba `(DMG)`. Uhlobo `(DMG)` lukhula ezingxenyeni eziphakathi zobuchopho. Okusho ukuthi, ezindaweni ezifana ne-`(Pons)`, `(Thalamus)` kanye ne-`(Spinal Cord)`. Kodwa-ke, `(DIPG)` lukhula ngqo endaweni ye-`(Pons)`.

Zombili ziyi-gliomas zezinga eliphezulu. Kodwa-ke, kukhona umehluko phakathi kwalezi ezimbili. Lapho welapha ingane yakho, udokotela wakho uzocabangela lo mehluko ukuze anqume ukuthi yikuphi ukwelashwa okungcono kakhulu kuwe.

Ubani othola i-DIPG? Kuvamile kangakanani lokhu?

Lezi zimila zingakhula ezinganeni zanoma yimuphi ubudala, kungakhathaliseki ubulili. Kodwa-ke, zivame ukutholakala ezinganeni ezineminyaka ephakathi kwemi-5 neyi-9.

Abantu abadala nabo bangaba ne-DIPG, kodwa akuvamile kakhulu.

Empeleni lesi yisimo esingavamile kakhulu. Ngisho nasezweni elifana neMelika, izingane eziyi-150 kuya kwezingama-300 kuphela ezitholakala zinalolu hlobo lwesimila minyaka yonke. Iningi lama-glioma akhula ezinganeni "asezingeni eliphansi", okusho ukuthi angelashwa futhi elapheke. Kodwa-ke, cishe yi-10% kuphela yama-tumor obuchopho ebuntwaneni ayilolu hlobo oluyingozi olubizwa ngokuthi "i-DIPG".

Ziyini izimpawu ze-DIPG?

Ngenxa yokuthi lesi simila, esibizwa ngokuthi ``DIPG'', sikhula ngokushesha kakhulu, izimpawu ziqala ukuvela ngokushesha. Hlala uqaphile lezi zimpawu enganeni yakho:

• Izinkinga zamehlo: ukubona okufiphele, ukubona okukabili, ukunyakaza kwamehlo okungalawuleki, izinkophe ezigobile.
• Ikhanda elibuhlungu: Ikhanda elibuhlungu, ikakhulukazi ekuseni. Ngezinye izikhathi, lobu buhlungu buyaphela ngemva kokuhlanza.
• Ubunzima bokuhamba: Ubunzima bokuhamba, ukulahlekelwa yibhalansi (i-ataxia), kanye nokuncipha kokuxhumana kwemisipha. Njengokungakwazi ukugcina izinyawo zakho phansi.
• Ukuwa noma ubuthakathaka ohlangothini olulodwa lobuso .
• Ubunzima bokuhlafuna nokugwinya ukudla.
• Ukuzizwa ubuthakathaka ezithweni zomzimba . Kuzwakala njengokulahlekelwa amandla ngokuzumayo engalweni noma ubunzima bokuhambisa umlenze.
• Isicanucanu nokuhlanza.
• Ukuzizwa sengathi inkulumo yakho ayicacile , awukwazi ukuhlanganisa amagama akho kahle (inkulumo engacacile).

Uma kuvela esinye noma ngaphezulu salezi zimpawu ngokuzumayo futhi sanda ngokushesha, kubaluleke kakhulu ukubona udokotela ngokushesha.

Yini ebangela i-DIPG?

Kalula nje, okwenzekayo ku-DIPG ukuthi amangqamuzana okufanele akhule abe amangqamuzana e-glial aba amangqamuzana omdlavuza. Lawa maseli omdlavuza abe esekhula ngokushesha nangokungalawuleki.

Ngokungafani nomdlavuza omningi, lesi simo esibizwa ngokuthi "i-DIPG" asibonakali sihlobene nezici eziyingozi zemvelo ezifana nentuthu kagwayi noma imisebe. Okusho ukuthi, akukakaqinisekiswa ukuthi sibangelwa yini okuthile abazali abakwenzayo noma okuthile endaweni ezungezile.

Kodwa-ke, uma ingane yakho inesimo esingavamile njenge-Li-Fraumeni syndrome, ingozi ingase ibe phezulu kancane. Futhi, izinguquko ezithile zofuzo, ezibizwa ngokuthi izinguquko, emaseli zingabangela i-DIPG. Manje sekutholakale ukuthi izinguquko kuphrotheni ebizwa ngokuthi i-H3K27M zingabangela la maseli e-glial ukuba abe nomdlavuza.

Itholakala kanjani i-DIPG?

Ngokuvamile, kudingeka i-biopsy, okuyisampula yezicubu ezithathwe ukuze kuhlolwe umdlavuza. Kodwa-ke, lokhu akunakwenzeka ngaso sonke isikhathi endabeni ye-DIPG. Lokhu kungenxa yokuthi indawo yesimila ibucayi kakhulu. Ngakho-ke, odokotela bavame ukuxilonga i-DIPG ngokubheka izimpawu zengane kanye nezifundo ezikhethekile zezithombe.

• Isikeni se-MRI (Magnetic Resonance Imaging):I-MRI ingaveza izithombe ezicacile kakhulu zesimila somntwana. Ingaphinde inqume ukuthi isimila sisakazeke ngale kwe-pons. Isimila se-DIPG sibukeka sihlukile kancane ku-MRI. Udokotela we-radiation onolwazi angasihlukanisa nezinye izimila ze-brainstem.
• I-Stereotactic Biopsy: Ngezinye izikhathi, uma kuphephile ukwenza kanjalo, udokotela angasebenzisa ithuluzi elincane, elifana nethubhu ukuze athathe ingxenye encane yesimila ukuze ihlolwe (i-biopsy). Kodwa-ke, ezimweni eziningi, ukuthatha ingxenye yezicubu ezivela kuma-pons asesifundeni sobuchopho kuyingozi kakhulu ngoba kungalimaza isiqu sobuchopho. Uma wenza i-biopsy ye-DIPG, kufanele kwenziwe kuphela esibhedlela esenza lolu hlobo lwenqubo njalo futhi esinolwazi endaweni.

Iphathwa kanjani i-DIPG?

Lokhu kuyadabukisa kancane ukuzwa, kodwa ukwelashwa kwamanje akukwazi ukwelapha ngokuphelele i-`(DIPG)`. Kodwa-ke, lokhu kwelashwa kungandisa impilo yengane isikhashana, kunciphise izimpawu futhi kunikeze ingane impumuzo. Isiqu sobuchopho siyindawo eyakhiwe izicubu zemizwa ezilawula imisebenzi ebaluleke kakhulu emzimbeni wethu. Ngakho-ke uma uzama ukususa isimila ngokuhlinzwa, lezi zakhiwo zemizwa ezibalulekile zingase zonakale.

Ngakho-ke, odokotela batusa ezinye izindlela zokwelapha ezingezona ezokuhlinzwa:

• Ukwelashwa ngemisebe: Lokhu kuyindlela yokwelapha eyinhloko ye-(DIPG). Kulokhu, umshini usebenzisa umsebe wemisebe ukubhubhisa amangqamuzana omdlavuza. Uzama futhi ukunciphisa umonakalo ezicutshini ezizungezile ezinempilo. Ukwelashwa ngemisebe kunciphisa isimila, kubulale amangqamuzana omdlavuza, futhi kunciphisa izimpawu. Ingane yakho cishe izothola ukwelashwa ngemisebe nsuku zonke cishe amasonto ayisithupha.
• Ama-Corticosteroids: Udokotela wakho angakunika uhlobo lomuthi olubizwa ngokuthi ama-corticosteroids ngaphambi noma ngemva kokwelashwa ngemisebe kwengane yakho. Le mithi ingasiza ekunciphiseni ukuvuvukala ebuchosheni futhi isize ukulawula izimpawu. Ingasiza futhi ekunciphiseni ukuvuvukala ngemva kokwelashwa ngemisebe. Kodwa-ke, ama-corticosteroids angaba nemiphumela emibi. Lokhu kufaka phakathi ukwanda kwesifiso sokudla, ukukhuluphala, kanye nokushintshashintsha kwemizwelo. Khuluma nodokotela wakho ukuze uqonde izinzuzo nezingozi zale mithi.
• Ukwelashwa ngamakhemikhali: Ukwelashwa ngamakhemikhali okwelapha umdlavuza ovamile akusebenzi kahle kakhulu kwi-DIPG. Kodwa-ke, ngezinye izikhathi udokotela wakho angase ancome ukuthi ingane yakho ihlanganyele ezivivinyweni zemitholampilo ezihlanganisa ukwelashwa ngamakhemikhali kanye nokwelashwa ngemisebe.
• Ukunakekelwa kobuhlungu:Ochwepheshe bokunakekelwa kwe-palliative bangasebenza nawe nodokotela wakho ukudala uhlelo lokunakekelwa olukhulisa ikhwalithi yempilo yengane yakho. Bangakunikeza ukwesekwa kwezokwelapha, kwengqondo, kanye nokwengokomoya okudingayo wena, ingane yakho, kanye nomndeni wakho lapho nibhekene nokuxilongwa okufana ne-DIPG.

Udokotela wakho angase futhi aphakamise ukuthi ingane yakho ibhaliswe esivivinyweni somtholampilo . Isivivinyo somtholampilo siwucwaningo oluhlola ukuthi ukwelashwa okusha kuphephile futhi kusebenza kangakanani. Abacwaningi bathole izici ezithile zamaseli omdlavuza (i-DIPG). Ukwelashwa okusha okuqondiswe kulezo zici - isibonelo , ukwelashwa okuqondiswe kuma-molecule kanye ne -immunotherapy - kungatholakala ngesivivinyo somtholampilo.

Isibonelo, abacwaningi bayazi ukuthi amangqamuzana amaningi omdlavuza anoguquko olubizwa ngokuthi (H3K27M) ku-gene ``DIPG''. Izindlela zokwelapha ezintsha, ezihlosiwe eziqondisa amangqamuzana omdlavuza ngalolu guquko (kanye nezinye) sezivele zakhiwa futhi zahlolwa ezivivinyweni zemitholampilo.

Ingabe i-DIPG ingelapheka?

Cha, i-Diffuse Intrinsic Pontine Glioma (DIPG) ayinakwelashwa. Ukwelashwa okusebenza kahle kakhulu okwamanje ukwelashwa ngemisebe. Ukwelashwa ngemisebe ye-DIPG kungandisa impilo yengane futhi kuthuthukise okwesikhashana izimpawu kanye nekhwalithi yokuphila. Kudingeka ukwelashwa okusha, okusebenzayo kakhulu ukuze kuthuthukiswe ukubikezelwa kwalomdlavuza ongathi sína.

Ingane ene-DIPG ingaphila isikhathi esingakanani?

Ngiyazi ukuthi lokhu kunzima ukukuzwa. Ngaphandle kokwelashwa, izingane eziningi ziphila cishe izinyanga eziyisithupha ngemva kokuxilongwa. Ukwelashwa ngemisebe ngokuvamile kungandisa lesi sikhathi sibe yizinyanga eziyisishiyagalolunye kuya kweziyishumi nanye. Izingane ezingaphansi kuka-10% ziphila iminyaka engaphezu kwemibili. Kuvamile ukuzizwa udangele uma uzwa lezi zibalo, kodwa kubalulekile ukukhumbula ukuthi ingane ngayinye ihlukile.

Yimiphi imibuzo okufanele ngiyibuze udokotela?

Sebenza eduze nodokotela wakho ukuze uqonde uhlelo lokunakekela ingane yakho kanye nezici ezizothinta ikusasa layo. Ungesabi ukubuza noma yimiphi imibuzo onayo. Nansi eminye imibuzo ongayibuza:

• Yikuphi ukwelashwa okuncomayo? Yini esingayilindela kubo?
• Ingane yami izodinga ukwelashwa kangaki?
• Kukangaki ingane yami idinga ukuza ngezikhathi ezithile ukuze ihlolwe inqubekela phambili yomdlavuza?
• Singayiphatha kanjani imiphumela emibi yokwelashwa komdlavuza?
• Ungasixhumanisa nezinsizakalo zokunakekelwa kweziguli ezidambisa ubuhlungu kanye namaqembu okusekela?
• Ingabe kukhona ucwaningo olusha noma izivivinyo zemitholampilo ingane yami engahlanganyela kuzo?

Okokugcina, izinto okufanele uzikhumbule (Umyalezo Wokuya Ekhaya)

Ukuthola ukuthi ingane yakho ine-Diffuse Intrinsic Pontine Glioma (DIPG) kungaba enye yezinto ezinzima kakhulu ongazizwa njengomzali. Ubuhlungu, ukwesaba, nokukhathazeka ozizwayo kungaba nzima kakhulu. Kodwa khumbula ukuthi awuwedwa kulesi sikhathi.

Njengoba wenza izinqumo zokwelashwa ezinyangeni ezizayo, sebenzisa lonke usizo nezinsiza ezitholakalayo kuwe. Khuluma ngokukhululekile nodokotela bengane yakho ngalokho ongakulindela ngalesi sifo. Uma ungakwazi, xhumana nochwepheshe abanikeza ukunakekelwa kokunciphisa ubuhlungu. Cela usizo kubangani nomndeni. Ngaphezu kwakho konke, hlala uxhumene nengane yakho. Khuluma nayo, dlala nayo, futhi uyinike uthando. Menze azi ukuthi unayo yonke inyathelo lendlela.

Kulezi zikhathi ezinzima, kubalulekile ukucabanga ngawe futhi unakekele impilo yakho yengqondo. Uma uhlala uqinile, nengane yakho izoba namandla. Awuwedwa, sonke sinawe.

I- Diffuse intrinsic pontine glioma, i-DIPG, umdlavuza wobuchopho, umdlavuza wezingane, i-pons, ukwelashwa ngemisebe, ukunakekelwa kobuhlungu